When I was born I was a bit of a late addition, my brothers were already in their teens. Not only was an extra surprise, I was a girl and my Mum and Dad were thrilled. So were my brothers (I think!)

You could say they thought I was one in a million!

My life went on and I got married and had two lovely children. I always wanted more but it wasn’t to be and I spent a lot of my life as a single mum.

When I was much older I met my current husband and we agreed to try for a baby together. My other children were already teenagers and I was getting on a bit so we didn’t know if it would happen but we were willing to try.

We tried for over two years, then I had a very difficult pregnancy where we thought we were going to lose our baby a few times. But she came into the world just a couple of weeks early and we were overjoyed. She was one in a million, our little miracle baby.

Having Star kick started my fertility and she was soon joined by two more siblings.

When Star was very young we knew that something wasn’t right, she seemed to be in pain a lot with her joints, especially her knees. We had her checked over and it turned out she had hyper mobility problems which was the cause of her pain. When she was older she woke one morning with a twisted neck and it turned into a major problem which took 18 months and five trips to the operating theatre to fix. It turned out that she has a rare condition called Elhers Danlos Syndrome which means her ligaments are very lax and she is prone to subluxations. She doesn’t actually have a definate diagnosis yet as there are many forms of EDS and the geneticist believes that she may also have another rare condition, Marfans Syndrome. We don’t know what the future holds for our little girl, but we do know that she really is one in a million and we will do what we can to make life good for her.

Last January I joined my daughter in becoming one in a million. In fact the condition I have is probably less than one in a million world wide, and I have an even rarer strain of the condition. I have Progressive Encephalomyelitis with Rigidity and Myoclonus which a form of Stiff Person Syndrome. It started suddenly and no-one has any idea why. Like Star, I have no idea what my future may hold but we carry on.

Research is so important with rare diseases. Cures and treatments can be found and those suffering can live fairly normal lives. With awareness we can avoid getting the wrong treatment. Star was treated wrong when her neck subluxed making it much worse. I have not been receiving the correct treatment for a year because my condition was misdiagnosed. A little support can go a long way, so that’s why I’m sharing our story today on Rare Disease Day 2017.

If you wish to learn more about rare diseases and how you can help spread awareness please click the poster and share what you can.

Thank you, from a mum in a million and her little Star.


It’s now Saturday affernoon and on Monday the kids will be going back to school after half term.
I love having them home, we can chill out, we don’t have to rush in the morning, we can do lots of things together.

So why do I feel like we’ve just wasted a week?

Last weekend we went out both Saturday and Sunday. We browsed the shops on Saturday and bought some new craft supplies. Then on Sunday we spent the whole day at Cosford Royal Airforce museum.

But, we haven’t been out since. Monday the weather was kind but the weekend had taken it’s toll and I was in too much pain to go out. The Little Man and his big brother played in the garden for over an hour which was nice. The girls stayed in all day but they didn’t mind.

The rest of the week has passed so quickly and I was feeling upset that we hadn’t achieved much. Maybe that’s not a bad thing. I mean the kids are stuck to a routine all week at school, they are out every day and busy all the time. Maybe, it’s okay just to chill out and not do much for a week?

Then I got to thinking of the things we had done in the week. We baked a lovely cake for Daddy for his birthday. In fact Boo did most of the work on this cake all by herself!

chocolate orange cake

We also baked chocolate cookies, you can never have enough cookies in the house!

chocolate cookies

The kids had their arts and crafts stuff out and instead of telling them what to do I left them to just use their imaginations and create what they wanted. Boo made a book, and Star and the Little Man made some lovely art work.

I also bought the kids some new notebooks when we went out last Saturday and they have been filling them up with words and pictures all week.

We have had some lovely books to review this week and the kids have enjoyed doing lots of reading. Boo has also been learning Spanish with a book and audio. I reckon she’ll pick it up really quick like this.

learning spanish with audio and book

We had some books from Lonely Planet Kids which were full of stickers and activities and the kids have spent ages filling them in, they are  so much fun.

sticker book fun from lonely planet kids

We’ve watched movies, played board games, and the kids have played with their toys.

Star has been trying to make slime at every opportunity after watching YouTube videos, she’s not had good success yet but I’ve just ordered some stuff online for her so watch this space.

Today we are back to one of my childhood fun activities and making some pom poms!

making pom poms

So, is it bad that we only had a couple of days out and have spent the week indoors?

Maybe, if it’s nicer weather tomorrow we can go out and blow away a few cobwebs. I don’t like staying in all the time but if the kids are happy and occupied then I suppose it’s okay.

Debs Random WritingsThe Ordinary Moments

Pink Pear Bear

Consolidated PBY-6A Catalina

If you’ve been reading my blog this week you probably already know that we actually made it to Cosford Royal Air Force Museum for Graham’s birthday treat. I guess it was the highlight of our week just being able to get out. It was Graham’s first time driving on the motorway too and he was really good. Thankfully, Cosford is really easy to get to and only just over 30 miles from home.

We had a lovely day walking around inside and out looking at all the plane and I think between us we took about 200 photos. 
It was hard to choose one for today but this one seems to have slipped the net everywhere else I’ve including photos (even our YouTube video!) So I have decided to put it here simply because I like the orange nose and tail. 
The museum is fantastic for plane lovers, but not so good for those who like good photos because inside the hangers everything is really crammed in and you can’t seem to get a good photo of one plane without getting another one in the way. The planes outside make better photos I think.
Hello to everyone passing by My Sunday Photo and My Sunday Snap Linkies. I’d just like you to know that I visit you all back and pin a lot of the lovely photos I see on my Sunday Photo Pinterest board.


Sunday Snap

I love pancake day, I love pancakes. In fact, why wait until pancake day, we don’t!

I’ve selected a few of my favourite pancake recipes to share with you. If you want more you can check out my Pinterest Pancake board! 

10: Bacon Pancakes!

Now, I’d never really thought about bacon pancakes until I saw them on my favourite animation Adventure time…so here’s Jake makin’ Bacon Pancakes!

And it’s really a thing! Bacon with Pancakes and Maple Syrup Recipe
Probably best served for breakfast, unless you are a bacon addict!

bacon pancakes

9. For the love of Traditional – Basic Pancake Recipe
Fill how you like!

traditional english pancakes

8. Let’s hear it for the Vegans, totally free from eggs, dairy, nuts and gluten! Fluffiest Vegan Pancakes
Such a gorgeous photo too!

vegan pancakes with figss

7. One of my own, Very Grown-Up Pancakes for loves of Black Forest gateaux.
My photo is bad, but the pancakes were good!

chocolate cherry and cream pancakes

6. Raspberries and Cream, what a delightful combination!

raspberry and cream pancakes
And a pan to cook them in –
crepe pan from lakeland
crepe pan from Lakeland  £18.99

5. Japanese Style Pancakes. My kind of pancakes are generally flat, although I do like drop pancakes, or American style pancakes too. These are really different as they are big and fluffy.

fluffy japanese pancakes

4. Staying with Japan but going savoury, I’m a huge fan of Okonomiyaki, or cabbage pancakes.

japanese okonomiyaki pancakes

3. Creme Egg Pancake Stack. Why is this not number 1, well, simply because I don’t think I’d be able to manage to eat the entire stack and that would upset me!

creme egg pancake stack

2. Pancake Art! I love it. I can’t do it myself, but I love to see those little videos of how they are done and I will, one day, be brave enough to try. Take a look at this fantastic 3D Millenium Falcon.

millenium falcon 3D pancake

1. Our favourite pancakes of all time have to be banana and Nutella. We can’t get enough of them.

chocolate and banana pancake
Whisk from Lakeland £6.49

I hope you have enjoyed my top ten pancakes, I’d love to know your favourite in the comments.

pin for later
pin for later

Disclosure: This post contains affiliate links

This week my word is flying, but I’ve not actually taken to the air!
Last weekend we managed a trip to the Royal Air Force Museum in Cosford and saw so many aeroplanes. The kids enjoyed the Fun n Flight area where they learned all about the science of flying.
They also enjoyed the Cuban Missile Crisis film where they learned about nuclear war, very scary stuff!
Graham enjoyed everything because he has a passion for aeroplanes, in particular those with a lot of history, like war planes.
This week has been half term and apart from the trip to Cosford we had a trip to our local craft shop and bought a whole load of craft items. The kids have had a lot of fun with their art and craft and the week has just flown by. Star and her Dad even made an aeroplane out of plasticine.
The Little Man had a fun hour in the back garden with his older brother, there is actually a 22 year age gap so you can imagine they don’t play together very often. However, the sun came out and off they went to play with the parachute toy we’d bought from the museum and they were also flying a rocket! 
Finally, how can I miss Storm Doris who woke me up yesterday morning at 5am. I know we didn’t get as much rain as some but the wind was pretty bad and sent everything flying in our back garden. We didn’t dare venture out, although Graham did and he saw many fallen trees. 
Now it’s the weekend which I’m sure will fly by too and the kids will be back at school. I like the peace and quiet for a few hours a day, but I also like having them around and not having to rush about in the morning. So I’ll be hoping the time flies by until Easter, which has to be my favourite holiday of the year.
How has your week been?
The Reading Residence